This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation.

Thursday, March 8, 2012

We have had hearing aids since Lauren was about 3 weeks old. We put them on her every day consistently, although it has gotten harder and harder to get her to leave them alone.
The hearing aids are Phonak Naida, very powerful but not overly large HA's. They were loaned to us by Hearts for Hearing. Thank you! Since it was known right away that Lauren would ultimately need cochlear implants, this is an interim solution. Hearts for Hearing attempts to provide hearing aids to families who are residents of Oklahoma through donations. In Kansas, or at least in the Wichita area, hearing aids can be provided through the Children's Miracle Network funding. Hearing aids are about $1600, so not a small expense. For kids who are going to get CI's in a few months, it makes sense to take a loaner approach.

Lauren's first hearing aid fitting

We have had at least one set of earmolds each month. To keep the hearing aids on her head, we originally started out using these little dual-sided sticky tapes called Stick n Stays (made specifically to fit the hearing aids). They are pretty pricey. For the past couple of months, we have switched over to lingerie tape. Ahh, yes, apparently there are many uses for lingerie tape. We are going through it pretty fast because Lauren rips them out about as fast as we can get them put in. It started when she was about 3.5 months old. She has since perfected the technique. I think she knows at this point that she can get our attention if she does that. Sometimes she uses the earmold as a chew toy if we can't get it from her fast enough.

Lauren getting earmolds

Lauren in Auditory Verbal therapy

We have done sound booth testing twice with Lauren. It seems like she might have responded to sound at around 120 dB, but at that point, it could be vibration.... nevertheless, we are seeing minimal or no response with the hearing aids.

We are anxiously awaiting the first CI surgery. We expect it to be in mid-May, barring any surprises. That will be at 9 months of age. We have talked with our audiologist, and should have the first activation within two weeks. :) Big Smile! We can't wait for that day. With Taylor, her surgery was bilateral at 14 months, but the activation wasn't for five long weeks after the surgery... it didn't have to be that long, but all of the audiogists schedules were full, so we had to be patient.

We had an MRI for Lauren as a prerequisite for surgery. All of the anatomy was normal and there is no other pre-surgery requirement for us beyond insurance pre-approvals.

Lauren on the day of her MRI with our friend Dr. Jackson

So, although we have a long road ahead of us, Lauren will have access to sound a full 5.5 months earlier than Taylor did... and considering how well Taylor is doing, I am thrilled to know that Lauren's potential should be unlimited.

Taylor and our AVT Tami

Big brother Derek loves Lauren. He's never too busy to give her a kiss on the head as he runs by. He has asked some questions about her ears. Now, he's figured out that Taylor's ears and Lauren's ears aren't like his, and he knows that Lauren will eventually have the cochlear implants.

Derek and Lauren

Taylor is about the best 3-year old big sister that I could have imagined. She dotes on Lauren, is sad and tries to get us to make her feel better when she is crying. She is around Lauren so much that during the couple times that we have left them with a babysitter, Lauren does much better if Taylor is there with her. When Taylor's not in the room with the babysitter, Lauren gets upset. As I reflect back on Taylor's time as a baby, I realize she was probably the same way with Derek. Other than with our every day nanny, I only remember leaving Derek and Taylor with a babysitter once, when he was 2 and she was 10 months. She got really upset because he was scared and upset.

Siblings are the Best!

As a mother, I am so thankful that my children have each other. Siblings are the best support network. They learn from each other, play together, and most of all, love each other.